I talked to RME about the situation in Sweden for ME patients. Here's what they had to say....

Who are the Swedish based ME charities and associations and what are their goals?

Riksföreningen för ME-patienter (RME, the Swedish ME Association) is a nonprofit organisation that provides information and support on ME/CFS to people with ME/CFS and their families, carers, health professionals and many others.

RME strives for increased awareness and knowledge about ME/CFS through dialogue with government agencies and health care providers, highlighting the need for biomedical research, accurate medical education and appropriate medical care.

RME also supports and funds biomedical research into ME/CFS through donations, as well as by organising conferences and scientific colloquiums to facilitate and nurture collaborations.

Do you have any idea as to how many people in Sweden suffer with the illness?

RME estimates that approx 40 000 people in Sweden are living with ME/CFS. Most of them have not been diagnosed.

How do Doctors and the government perceive ME in Sweden?

Sadly, there is an obvious lack of awareness and knowledge among the majority of them. particularly regarding the current state of biomedical research on ME/CFS. There currently are no national guidelines for ME/CFS, so the situation varies a lot from region to region, and from person to person.

Sadly, the psychosocial view is common, and there is a disturbing tendency to clump ME/CFS together with medically unexplained symptoms (MUS). However, there are a minority of doctors who recognise ME/CFS as a biomedical illness.

What is the current prescribed treatment and is it successful?

There are currently no national clinical guidlines for ME/CFS, so the treatments offered vary quite a bit according to which clinic you attend, and from doctor to doctor.

There are no effective treatments. Some prescribe medications for sleep and pain management, antidepressants, supplements and/or recommend physical therapy. Others only offer acceptance and commitment therapy (ACT), cognitive behavioral therapy (CBT) and/or graded exercise therapy (GET, which is potentially very harmful for people with ME/CFS!). A few prescribe vitamin B12 injections and/or low dose naltrexone (LDN). And then there are others who don't offer anything at all but a referral to a psychiatrist, even to the point of denying the patient basic medical investigation and tests.

Does Sweden have specialist centres for diagnosis and treatment of ME?

Yes, there are two main specialist centres, both biomedical: Stora Sköndal's neurological rehabilitation centre in Stockholm and the Gottfries Clinic on the west coast.

The ME/CFS centre at Stora Sköndal opened in 2015 and, because of the long-standing countrywide lack of ME/CFS specialists, has been completely swamped from the very first day. They are sorely understaffed but recruiting is a huge challenge, there simply aren’t enough competent doctors. The centre has an extremely long waiting list, and is therefore currently not accepting new referrals.

The Gottfries Clinic has been around since 1998. Sadly, its current contract won't be renewed when it runs out at the end of November 2016, and the local politicians are now in the process of procuring biopsychosocial services instead

There's also Gotahälsan, a private biomedical clinic, for those who can afford it. Unfortunately, it has recently limited its ME/CFS services to a minimum, not accepting any new patients

There's also a new ME/CFS centre in Linköping, at the Pain and Rehab Centre, that we don't know much about yet.

There are a few people doing (very valuable!) biomedical ME/CFS research in Sweden, for example the Gottfries Clinic, Jonas Blomberg, Jonas Bergquist and the ME/CFS centre at Stora Sköndal. Funding for ME/CFS research is very scarce here in Sweden, just like everywhere else.

What are the biggest problems that patients face surrounding the availability of treatment?

The general lack of clinical expertise in the country and the lack of regional biomedical specialist centres is an immense problem, as is the lack of accurate medical education among primary care providers. The widespread tendency to view ME/CFS as a psychological/behavioural disorder is hugely problematic too. And of course there's the massive global need for solid biomedical research, as well.

Especially worth mentioning is the desperate situation for the severely ill patients who aren't able to leave their house or their bed. It's extremely difficult to get access to home visits by competent doctors and/or home-based medical care, so there's a large group of immensely sick people who are totally abandoned by the health care system.

Are the medical/government establishments funding biomedical research into ME? Are they interested in efforts to cure ME?

The government appear to take no interest at all in this disease, which means that there isn't any serious commitment, no sense of urgency whatsoever. There currently is no biomedical research funding and no program investments, no clinical trials into medical treatments, and there's a desperate lack of accurate medical education and biomedical ME/CFS specialist centres.

Are patients protected by the state/given benefits etc for not working?

Most people living with ME/CFS eventually manage to get the sickness compensation they are entitled to. However, for many that only happens after several years of absolutely draining lengthy legal battles with the Social Insurance Agency (Försäkringskassan).

As a result, many are forced to return to work despite being very ill, and/or are pressured into undergoing potentially harmful ”treatments” such as CBT and GET against their will, under threat of losing their income. Sadly, this often causes severe relapses, increased disability, disease progression and/or permanent symptom worsenings for many many ME/CFS sufferers. The situation is immensely problematic.

The Social Insurance Agency has no national guidelines regarding ME/CFS, so the situation varies a lot from region to region, and from case worker to case worker. The general tendency though, is for them to claim that ME/CFS isn't a real medical condition and that any disability supposedly caused by it can't be objectively verified by tests and investigations, and therefore ME/CFS is not a valid reason not to return to work.

What would you like to see changed about treatments currently offered in Sweden?

The most important step would be to stop inappropriate and potentially very harmful treatments such as GET, and to make sure that patients would no longer be denied proper medical investigations, tests, symptomatic treatment or treatment for comorbidities by those falsely claiming that ME/CFS is simply ”false illness beliefs”, a psychological/behavioural disorder.

We would like there to be a biomedical specialist clinic in every region, every landsting. This is crucial, in part because of the large number of patients, but mostly because of the great geographical distances (most severely ill people can't travel at all).

Improved primary care would be hugely helpful and a good start, but we believe regular visits with a skilled biomedical ME/CFS specialist is necessary for most patients.

We believe severely ill patients should be allowed access to experimental treatments on compassionate use and named-patient basis, in the same way that patients living with other similarly disabling illnesses are.

We would welcome access to immunomodulatory and anti-viral drugs etc as needed, like the ones that are currently offered at the specialist clinics internationally.

We are very much looking forward to hearing the results of the ongoing Rituximab and Cyclofosfamid treatment trials in Norway, hoping that they will lead to new treatment options in the near-ish future. Easier access to symptomatic treatments such as vitamin B12 injections and low dose naltrexone would be immensely helpful.

What is the outlook for patients in Sweden? Are there reasons to feel positive? What can be done?

We believe and hope that there's reason to be optimistic, at least in a long term perspective, even though things seem to be moving very slowly.

Stora Sköndal with their biomedical focus and skilled staff is an important step in the right direction.

At the same time there are disturbing tendencies moving in the opposite direction... The main one at the moment being that the excellent and much appreciated biomedical Gottfries Clinic is about to be shut down and replaced with a biopsychosocial centre that no one but the inept politicians want. The psychiatric lobby and supporters of the MUS concept continue to try and claim ME/CFS as one of theirs. The belief in CBT and GET as ”effective treatments” for ME/CFS is still strong, among politicians and decision makers in particular.

As a group, people living with ME/CFS are getting more and more well-informed, aware of the political challenges and the emerging biomedical science. Patient advocacy keeps getting stronger, and thanks to discussion groups on the internet it's possible to get help, learn and take active part in the patient community even if you're unable to leave your bed or pick up the phone.

Our main source of hope would probably be the advances continually being made by the international biomedical research community. Fluge & Mella's Rituximab study in Norway, and the studies by the Open Medicine Foundation in the US, for example.

What can be done?

We believe it's important to keep raising awareness and striving for increased knowledge, to advocate for biomedical research and appropriate medical care, and to do our very best to make sure that no more harm is done.